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My doctors asked me all the questions about depression and sleep problems and still put me on Atripla even though I was already having issues .

I'm not doing well on Isentress and must find a new combo to take , despite my CNS , lipid , diabetes and over all crazies in the head I will probably do as my doctors advise and go back on Atripla by the end of this week . I took it for many years and dealt with the side effects so I guess I will have to do it again .

This is one of the reasons I jumped into this thread , starting or changing meds can be complicated ... and in my case expensive .

Before I started meds shortly after being diagnosed my dr and I discussed various regiments including the use of Sustiva (Atripla was a few months away from being approved). The number one reason I chose not to use it was what I felt were the very strong possibilities, with my history of depression, the mental side effects. I am very fortunate to have had an initial dr that really explained each drug and was willing to listen to my concerns and work with me in deciding my meds.

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

Jkinatl2, that is a disturbing story and I'm glad you were able to identify what was going on and get through it. I think that disclosing personal stories, like you just did, is much more helpful and meaningful than a clinical list of possible side effects. My feeling is the more information the better. Not having information about a condition is scary, only having part of the information can be even worse and the more perspectives we have the better we can understand the complete picture.

To be totally fair to my doctor (who was, as I mentioned in another thread, a bit of a tool) at the time, Sustiva was brand (ish) new, and the CNS issues, if they were mentioned AT ALL in the literature, were so buried that no one knew their extent. It was only by telling other people about what was happening that a light bulb went off. Even then, my doc was so dismissive he would rather give me enough Welbutrin to cause a seizure, throw Klonopin at the resulting anxiety, than consider that an HIV drug could do that.

I have no idea what he thinks now or what his protocol is, if anything. But I do know that I was not asked about pre-existing depressive or anxiety issues since, which is a little scary since my file is a foot thick and I am pretty sure it gathers dust unless it is being written in, on my appointment days.

I know that disclosing studies is important. But I also know it comes at a price. And, well, I have paid it a time of two here, and am a little gun-shy about doing it routinely. I agree that I shoot myself in the foot by being a hypocrite regarding the disclosing of information (even personal information) on a site specifically created for such. But to some folks, any weapon in a war of words, and my intellectual.cognitive credibility is about all the currency I have.

We all know it's not my spelling. Or brevity.

*modified for typing with paws.

« Last Edit: December 07, 2010, 02:43:14 PM by jkinatl2 »

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I am not. Currently on Isentress, Trudava, Prezista, Norvir. Dapsone as a chaser. And though not achieving anything close to optimal benefits thanks to all the resistance issues, I am one of the lucky ones whose virus has been damaged enough by my flinging medical poop at it that, so long as Wild Strain does not run unopposed, it seems to be doing a much poorer job of finishing me off.

There is a study supporting this, but I just doin't have a Google in me right now

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I'm with Matt. My own experience and that of my close friends, is that HIV meds nowadays generally work and are generally free of significant side effects. Not perfect, but good enough. Enough to make being positive a bit of an afterthought (mostly).

I understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal. And this is coming from someone who was on Atripla for about two months, until he told the nurse he ain't taking that shit ever again.

I'm with Matt. My own experience and that of my close friends, is that HIV meds nowadays generally work and are generally free of significant side effects. Not perfect, but good enough. Enough to make being positive a bit of an afterthought (mostly).

I understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal. And this is coming from someone who was on Atripla for about two months, until he told the nurse he ain't taking that shit ever again.

P.S.- Why ain't the drugs in our spell check? Now that's, a big deal.

I always feel that I am spelling the drugs wrong, thanks tot he spell check. also, meds. Common enough, no?

And I must admit I am hesitant to embrace, in the states the status of HIV as it appears to be becoming in the UK and other places with socialist medicine. Telling a 25 year old with no serious career notion that he must lock in to an insurance option (and a company that will insure him) for the rest of his working life, or prepare to migrate based largely on coverage, is a pretty big deal.

For a 35 or 40 year old, maybe navigating the miasma of insurance and the expectation of denial is nothing big, combining the "sticker shock" of changing/losing jobs combined with the fast-track of understanding the real, ugly underpinning of the US insurance system (not to mention ADAP, medicare, Cobra and the like) means real drug adherence issues.

And you did note that your first regimen did not work out. Many people do not have the relationship with a doctor that you do - and I suspect you might not have had the same relationship, had this been fifteen years prior to your current state of maturation

I know there are serious drawbacks to the UK version of healthcare. I also think that, for those diagnosed with a serious illness (especially while young) the US presents a learning curve that is pretty steep, and is indeed a big deal.

But if the consensus is indeed that it is no big deal, then why use condoms? Why disclose?

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Experiences of living with HIV will never be uniform. For many it can be difficult. But, equally, for others it isn't. I'm not sure where this leads us, except that if someone were to ask me about my experiences with meds they will likely get a completely different story from your. Each person will have to decide how they will navigate their own maze.

Having said all that, and just to be clear, I didn't find living with HIV in the US to be anymore difficult than living with it in the UK. That's not to say this isn't the case for everyone, but it is my experience.

I still think you are using a bogeyman opponent. It doesn't seem that anyone says there is a "consensus* that it is no big deal.

This forum shows that HIV AIDS is experienced in so many many different ways.

It is indeed a different journey for different people. But I strongly suspect that if you scratch the surface of some of the folks here who insist that it is No Big Deal you will find that they have encountered and endured some obstacles that are, actually, a Big deal.

And frankly Cliff, I am a little surprised that you would come down on the side of fifty-fifty, considering the struggles you yourself went through only a few years ago. I suppose time does indeed create a filter through which we exist.

And mecch, I am not creating anything. I was pointing out the very real and persistent struggles inherent in an HIv diagnosis that cannot be dismissed like a truant student.

I am actually amazed that you, a teacher of young people, would advocate such an idea. I am nothing BUT optimistic about treatments, present AND future. But I would never suggest to the general public that AIDS is over.

The Boogeyman is not something I have created out of whole cloth, and I have more than demonstrated my rationale for my thoughts. I am glad that you and Cliff have been wealthy enough in spirit and in financial resource to cope with your diagnosis with no real trouble. I certainly wish that I had lived in a socialist-medicine country, or had been a practicing attorney when I tested positive. It certainly would have made that transition a lot more accessible.

I urge you to tell your stories, in the Newly Diagnosed forums, and tell those who are afraid exactly why, from a biological, pharmaceutical, societal, and financial point of view that HIV is no Big deal.

Instead of popping into threads to disparage people with opinions based on some sound factual evidence, I urge the both of you to provide your own, presumably based on your own experiences and your own perspectives. By all means, show us how you represent the majority, and I the dwindling minority.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I am not in the "no big deal" camp. Where did you get that idea? 1) I carried enormous emotional baggage from the 80's and 90's AIDS horror stories and tragedies. 2) I also agree 100% about the economic factors that need to be figured into living with HIV.

For 1) - I had the chance to be in therapy for a year before I seroconverted, the therapy initiated however cause I was suffering from and not dealing with an HIV related nuclear blast in my life. So have spent two more years since seroconversion working to a new way of thinking about HIV.

For 2) Can't say I "lucked out" living in a country with universal care but do definitely see this as lucky. (One of the reasons among many I left NY was the terrible stress of living in such a capitalistic society with no safety net. Exciting sometimes, but it had also left scars on my soul - for example, see above - 80's and 90's horror stories. So its not a complete accident that I am in such a country.) Lucky, then - cause HIV treatment was immediate, when it was almost immediately necessary. Paying for it doesn't stress me too much - but does of course lock me in to this life here - which I like for lots of good reasons anyway, so....

For this one person, its been an emotional/psychological and sexual challenge. I mention also the possibility that "HIV is a gift" - though that trope seems churlish in this thread and its an equally tricky discussion.

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ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Jonathan, no one is disparaging anyone. I don't think this needs to be a us versus them, as I have no idea where I stand. I get, and have stated, that our experiences differ. I get that HIV is difficult for lots of people (even more so, outside of the Western world). But my experience and that of my friends is that the meds (my original point) largely work for those without significant resistance issues.

I'm not sure what struggles you are referring to and I'm not a practicing attorney. I'd rather we avoid making this personal.

HIV as a gift is a difficult conversation, granted. I understand the mind set, but agree that this is a topic for another thread. And I thank you for being forthcoming with your story.

Many factors go into determining the lay of the land where HIV is concerned. And while I am glad that some of us have had the foresight or the happenstance to find ourselves with the right regimen, paid for with the right resources, given by the right doctors at the right time, I cannot possibly believe that these very important things can happen often enough to give a fifty percent chance of total success.

And of course, there are the variables of mental health, both in terms of services available and services needed (with underlying self esteem issues, depression, bipolar and substance abuse issues) that happen to manifest and resolve themselves in a timely manner.

In a perfect world, HIV is no big deal. But we are not perfect people, and we live, many of us, in different worlds. Seems like you got out of the US in time to resolve many of your problems before diagnosis. I submit that the state of health care in the US is such that people do not do so in that order - that diagnosis comes first, and determining/resolving underlying issues comes later, if at all. And in the meantime, as I am sure Cliff can attest, the first round of treatment is sometimes ill-advised, given a psychological history that often remains undefined until after the fact.

I re-submit that the assertion that this virus is easily controlled and that the surrounding factors are universally supportive is, at best, a flawed assumption. I further submit that it is dangerous in that is advocates complacency and a complicity insofar as new infections are concerned.

We are so very fortunate to be alive during this time of amazing scientific breakthrough. Declaring HIV as "No Big Deal" is a disservice to our fellow newly infected brothers and sisters, and a further disservice to a community already heading towards another spike in infections.

It remains disturbing that people who should know better, who have seen evidence to know better, would advocate such disinformation. I certainly hope that you, along with others, continue to stress the seriousness of this pandemic, even as we lift our positive brethren with the realistic hope of controlling the illness.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

We are so very fortunate to be alive during this time of amazing scientific breakthrough. Declaring HIV as "No Big Deal" is a disservice to our fellow newly infected brothers and sisters, and a further disservice to a community already heading towards another spike in infections.

It is also a disservice to those who have been saved by HAART but are now beginning to see the ramifications of long-time (and, in some cases, relatively brief) HIV infection and/or antiretroviral use. There has been much recent (but only recent) observation and interest in the hastening of the aging process among HIV-positives: brain fog, neurocognitive difficulties, cardiovascular problems, bone problems, co-morbidities and cancers (lung, liver, anal, lymphoma, etc.). We may have been saved from the early epidemic's opportunistic infections, but it is possible that our 30-, 40-, 50-, and 60-year-old bodies are succumbing to the medical depredations of 80-year-olds. And that IS a big deal.

« Last Edit: December 08, 2010, 04:48:49 AM by edfu »

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"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Jonathan, no one is disparaging anyone. I don't think this needs to be a us versus them, as I have no idea where I stand. I get, and have stated, that our experiences differ. I get that HIV is difficult for lots of people (even more so, outside of the Western world). But my experience and that of my friends is that the meds (my original point) largely work for those without significant resistance issues.

I'm not sure what struggles you are referring to and I'm not a practicing attorney. I'd rather we avoid making this personal.

I am very sorry, Cliff, but I fail to understand how this cannot be personal when you yourself state, as proof that HIV is No Big Deal, that :

<<But my experience and that of my friends is that the meds (my original point) largely work for those without significant resistance issues.>>

Are you discounting Moffie as your friend? Christine? Alan? Mark? Jody? All the others who so often helped you through your own struggles? Are they not your friends? Are they not struggling with, and in some cases have they not passed thanks to this virus?

I am afraid that it is indeed personal when you use yourself and yout friends as examples, omitting those of us on this very site for whom it has indeed been, and continues to be a big deal. If indeed you are referencing persons diagnosed and treated past 1996, then I suggest you be more clear. because I assume these people, many of whom were instrumental in your mental and physical preparedness for these drugs, to be counted among your friends.

For those who react well to Atripla (currently the first-line drug therapy) which seems to run around fifty percent, and for those who can afford an unlimited supply of aforementioned drug (whose mileage will vary depending on the country, and in the US, on the state and circumstance) then you are right.

Which makes the caveats to your position a little heavy, no?

I am glad that HIV had been a non-issue for you. That it caused no depression, no long term self esteem issues, no stigma, nothing that would mentally disparage you from seeking proper medical treatment (and in cases here in the USA, from aggressively and persistently pursuing aforementioned treatment) as well as mental health therapy (which is harder to get than medical treatment). You have had a marvelous experience in HIV treatment, with zero substance abuse issues clouding your treatment and no lack of community support.

If your circumstances are indeed the norm, than folks like myself need to relegate themselves to the LTS forum and leave the true assessment of HIV experience to those such as yourself.

I was not aware that these were indeed your circumstances.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Why can't newbies and as a matter of fact all people living with HIV be hopeful? I went through hell when I was diagnosed. I was suicidal and very serious about it as well. I didn't believe the Dr's when they said you can have a 'near to normal' life expectancy. I thought there assurances were cynical and sympathetic at best. But why would they lie? I have met with the most senior ID doctor in the UK, Dr Proff Gazzard. He is known round the world. I paid to have a consultation with him and asked him 'please tell me the truth' - he said the same thing as my ID dr and so many others, that you can live a long time with it and more likely to die from something else than AIDS.

Did anyone pick up 'The Times' in the UK on world aids day. There was a whole pull out about HIV. Nearly every article, written by qualified Dr's, healthcare officials, etc all stated the same thing, that this disease has become chronic and life expectancy is near normal. There were about 10 different articles that said the same thing.

Do you honestly really think anyone on here is trying to fluff over the hardships that this disease causes people? For g-d sake anyone that lives with it is qualified to talk about it!! We all know what it can do to us. It's horrible. But my brother is a cancer survivor and lives with diabetes type 1. Does he constantly go on about the potential of losing his limbs, going blind, dying from kidney failure?? Does he heck. Does he constantly tell people diabetes can't be lived with?? If he went onto a diabetes forum it would be full of people talking about losing their limbs, going blind. In fact if you go onto any forum for cancer, Ulcerative Colitis or any other disease, it will be full of posts from people that are suffering.

I live with UC and HIV. My life is spent in a toilet in pain, bleeding, colon full of ulcers that burn like hell every time i eat and something passes over them. I take my atripla in the morning and feel dizzy all morning like i've done today at work as i type this! I've been hospitilised with pneunomnia and other things since becoming HIV +, but that doesn't stop me from hoping that the dr's and specialists are telling the truth about this disease.

Why would you want to take the hope away from people? Your mindset is completely wrong? If you care about activism then go and become an activist but don't use this forum to tell the newly diagnosed that their life will not be worth living now they are HIV+. Are you comforting them? Supporting them??

We are not the only one's living with a complicated disease that requires treatment. As someone said..try telling someone dying of cancer that we have HIV and we're upset...they'd bite your arm off to be alive!

Yes this disease is shit...one of the shittest diseases out there..but come on, have some hope and start living your life. Read the article below. What do you think about what was written? More lies?

Why would you want to take the hope away from people? Your mindset is completely wrong? If you care about activism then go and become an activist but don't use this forum to tell the newly diagnosed that their life will not be worth living now they are HIV+. Are you comforting them? Supporting them??

my approach was quite pessimistic some months ago. since i have start haart i changed my mind and i'm quite hopeful. i have no side effects so far and the scientific community is now putting a big effort in finding a cure for the disease. hiv is no more the doom it was a decade ago. there are many disease a lot more disturbing than hiv. on top of the list cancer but also hcv which is curable in a small portion of patients but with a heavier treatment than hiv. a father of a friend has it and there were days he was willing to change his condition with mine!

« Last Edit: December 08, 2010, 10:56:03 AM by xman »

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sign the petition launched by the aids policy project addressed to the nih aimed to increase the money needed to find the cure:

Cliff's original statementI understand the resistance issues many face, but for someone relatively recently diagnosed, I wouldn't be offended by the notion that it's (mostly) no big deal.

xxx

I am not offended by this at all. But I am amazed that you would make such a global statement even when newly diagnosed posters are obviously having huge trouble with first line therapy - both in terms of dealing with it from a stigma point of view, paying for it regularly, and enduring the side effects - particularly the CNS ones.

You can be as snarky as you want, but this still remains a big enough deal to take - risk- and disrupt lives. Your own experiences notwithstanding.

I have had wonderful experiences in the last decade or so with affording drugs. As have most oif my friends. Does this mean that they are affordable? Or that having medicare and Ryan White funding is an anomaly I happen to share with others? I would never be so arrogant at to suggest that my experiences are routine, or even enviable. I am certainly not "fighting" for my own perspective here.

I understand that for many of the people arguing this point, it is personal. I only wish that it were personal as regards to the subject.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

When have I or any one here done this? When is realism the enemy of optimism? I am appalled that someone would want to turn this thread into that.

Taking this virus seriously and respecting the powerful meds used by many to control it are fundamental to surviving it. That is all.

I am sure your brother does not feel cavalier about diabetes. I am sure you do not feel cavalier about UC. Ignoring the fact that, without proper treatment, HIV is deadly is idiotic. Pretending the meds are benign for everyone is an insult to the people right here for whom they are most assuredly not. And benign or not, the meds are appallingly expensive, and require a dedication to insurance (which in the US means dedication to employment on a rather professional level) that many simply do not have, and/or cannot sustain.

These are facts. I am not trying to take hope away from anyone. I am trying to instill hope, REAL hope instead of smoke-up-your-ass hope that, if these forums are any indication, seems to always evaporate when reality sets in.

I honestly am baffled at the hostility. One used to think knowledge was power. It seems that for many, the lack of knowledge is power, and knowledge is hurtful.

And for the record, this was not posted in JUST TESTED POSITIVE. It was not aimed at hurting newbies or disparaging people. It was simply disabusing the notion of No Big Deal.

Jesus. You mention the harsh realities you and your brother have to live with, then turn around and pretend that this is nothing because you, personally, tolerate the Atripla? Half of the folks who take it don't. And the next line of therapy is more expensive AND more difficult. Hopefully in time this will change. But the reality TODAY is that it is a big deal.

A big deal that can be survived, and a life can even thrive, if the virus is controlled.But not dismissed as irrelevant. Which is the mindset I have seen here quite often recently, especially among the newly diagnosed (but obviously also among the privileged and those in nations who subsidize the meds).

Is there no meeting of the minds to be had? Should those of us who have to fight for the next month supply, who have serious side effects be shunted aside? And should newly diagnosed persons not be told these truths, which will effect many if not most of them?

I think that by being honest with the seriousness of HIV and the meds used to control it, I am offering real hope. I am aghast at how many people take Atripla, yet do not know what medications are in it. I am amazed when people find themselves unable to afford it when they have done zero research into funding and cost. Living with HIV is NOW a decades-long proposition. Knowing what these meds are, what they do, how much they cost, and what one must do in order to insure themselves is the very epitome of hope.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I disagree. And I think I have been more than eloquent to that regard.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

my approach was quite pessimistic some months ago. since i have start haart i changed my mind and i'm quite hopeful. i have no side effects so far and the scientific community is now putting a big effort in finding a cure for the disease. hiv is no more the doom it was a decade ago. there are many disease a lot more disturbing than hiv. on top of the list cancer but also hcv which is curable in a small portion of patients but with a heavier treatment than hiv. a father of a friend has it and there were days he was willing to change his condition with mine!

Is the effort any greater in searching for a cure or better treatment than in the past? I agree for those of us diagnosed these days our drs are far more optimistic than those diagnosed 15 - 20 years. At that time while drs were telling patients they were HIV+ the patient was also being told to begin to get their affairs in order. But don't forget some LTS face hardships on a daily basis due to HIV that we may never know. Plus one who has insurance, a job and a good support system are at a much more advantageous position than those without insurance, are unemployed and lack the support the need. I also think there is a far greater stigma attached to HIV than to cancer, otherwise we wouldn't have such a difficult time disclosing or lying about our status. Finally in my opinion some of the most pessimistic are the newly infected with their doom and gloom outlook when first diagnosed. Those of us who have 3 or 4 years under our belt or are LTS aren't pessimistic, but realistic. We all hope for cures, vaccines, better meds, better health care/insurance, less stigma but we realize that it is what it is today.

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

Is the effort any greater in searching for a cure or better treatment than in the past? I agree for those of us diagnosed these days our drs are far more optimistic than those diagnosed 15 - 20 years. At that time while drs were telling patients they were HIV+ the patient was also being told to begin to get their affairs in order. But don't forget some LTS face hardships on a daily basis due to HIV that we may never know. Plus one who has insurance, a job and a good support system are at a much more advantageous position than those without insurance, are unemployed and lack the support the need.

That's true Woods

But some people loves nothing more than wallowing in their own misery and try to make others drown in it too, try to conceal it as some higher intellectual discussion. But too delusional to see that they have some serious psychological issues.

Taking this virus seriously and respecting the powerful meds used by many to control it are fundamental to surviving it. That is all.

who said they are not taking the virus seriously? I take it extremely seriously. Hence why I take my meds every day without fail. I know what it does to people. Has there been one post on here from anyone saying HIV isnt serious? Do i respect the meds? I don't respect them, i take them. I know how powerful they are. I know how shit i feel from them...can't think straight, brain fog, impairment, memory loss, dizziness, insomnia..etc..but i take them and get on with it. I don't pay homage to them. They keep me alive and that's that..much in same way insulin keeps a diabetic alive.

I am sure your brother does not feel cavalier about diabetes. I am sure you do not feel cavalier about UC. Ignoring the fact that, without proper treatment, HIV is deadly is idiotic. Pretending the meds are benign for everyone is an insult to the people right here for whom they are most assuredly not. And benign or not, the meds are appallingly expensive, and require a dedication to insurance (which in the US means dedication to employment on a rather professional level) that many simply do not have, and/or cannot sustain.

Again, who said that HIV isnt deadly??? Did I?? Why on earth would anyone say such a thing and more to the point why do you accuse others of saying it? The small minority of people out there (not on these forums) are called denialists. They are marginilised and have a completely distorted view on things. Their view is irrelevant. What we are discussing is the view of the masses, and if the view is 'there is hope to be had'; this isnt the same thing as 'HIV isnt deadly'. Hope is not denialism. I've spent many weeks in hospital..nearly died. I know what it's like believe me. But where are you going with your thread?? If this forum was full of denialists then i'd say go for it, but it's not.

These are facts. I am not trying to take hope away from anyone. I am trying to instill hope, REAL hope instead of smoke-up-your-ass hope that, if these forums are any indication, seems to always evaporate when reality sets in.

Your not installing any facts. Your not quoting facts or statistics, but rather quoting objective personal experiences that may not match someone elses. For every person doing well with HIV there is a person doing badly. Again what facts are you trying to display? That HIV is deadly? We get that? That the meds are powerful? We get that? But what is your point? How are you helping people?

Jesus. You mention the harsh realities you and your brother have to live with, then turn around and pretend that this is nothing because you, personally, tolerate the Atripla? Half of the folks who take it don't. And the next line of therapy is more expensive AND more difficult. Hopefully in time this will change. But the reality TODAY is that it is a big deal.

Where did i say that HIV is nothing? Did you not read my post! I was suicidal. I have been hospitilised. HIV has destroyed me in so many ways. But I have hope for the future. Where did I say that it's nothing??? You are making this up as you go along.

A big deal that can be survived, and a life can even thrive, if the virus is controlled.But not dismissed as irrelevant. Which is the mindset I have seen here quite often recently, especially among the newly diagnosed (but obviously also among the privileged and those in nations who subsidize the meds).

Who said HIV is irrelevant? If someone is getting on with their life and trying the best they can to put it to the back of their mind (as we all do!!) and trying not to let it eat away at every cell of their existence..surely they should be comended? Surely that's a good thing? Or should we wake up and every day say in the mirror 100 times 'HIV IS BAD'. We know it's bad!!! Again what is your point?

I think that by being honest with the seriousness of HIV and the meds used to control it, I am offering real hope. I am aghast at how many people take Atripla, yet do not know what medications are in it. I am amazed when people find themselves unable to afford it when they have done zero research into funding and cost. Living with HIV is NOW a decades-long proposition. Knowing what these meds are, what they do, how much they cost, and what one must do in order to insure themselves is the very epitome of hope.

In my opinion you are not offering hope. You are taking hope away. You are dismissing hope in favour of 'realism'. Believe me, I am a realist. Probably more than you. So much so i have signed up to a Euthanasia clinic in Europe and have spent a lot of time and effort puting my plans in order should things get bad. I know that today I could be good but tomorrow could be terrible. But i still have hope that I may go another 20-30-40 yrs and look back one day and say...'God, i'm glad i stayed around to witness all these years'. Have realism, that's fine, but don't dimish the hope of others.

But some people loves nothing more than wallowing in their own misery and try to make others drown in it too, try to conceal it as some higher intellectual discussion. But too delusional to see that they have some serious psychological issues.

I cannot imagine this is germane to the discussion, unless of course you are planning to outline exactly who you are referencing.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

But some people loves nothing more than wallowing in their own misery and try to make others drown in it too, try to conceal it as some higher intellectual discussion. But too delusional to see that they have some serious psychological issues.

Fortunately I don't know of anyone on this sight who is that way! And I don't think any of us here can make qualified statements regarding anothers psychological status based on internet postings.

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

But some people loves nothing more than wallowing in their own misery and try to make others drown in it too, try to conceal it as some higher intellectual discussion. But too delusional to see that they have some serious psychological issues.

They are ammunition and they make those of us who do this thing targets for others.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Your not installing any facts. Your not quoting facts or statistics, but rather quoting objective personal experiences that may not match someone elses. For every person doing well with HIV there is a person doing badly. Again what facts are you trying to display? That HIV is deadly? We get that? That the meds are powerful? We get that? But what is your point? How are you helping people?

I actually quoted facts in my very first post on this topic. And have done so several times since.

Throwing these posts in the face of a significant number of persons on this forum who did not wish to know them was considered negativity. I suggest you read the thread.

If "hope" means intentionally downplaying the seriousness of the virus or the meds, then I suggest that you are correct in your assessment. And it is quite possible that for those who cannot find a meeting place between utter blind optimism and suicidal negativity, this level of denial is needed in order to keep a person alive.

And maybe this is why this thread is NOT in JUST TESTED POSITIVE, and is instead in LIVING WITH, where information is considered power, and not punishment.

You know something? It's not my job, nor my desire to instill fear OR hope. HIv is a remarkably unique bug, and the meds often have a unique impact on those who take them.

What pisses me off is when ANYONE comes here and tries to tell the entire group that their outlook and their experiences are the only valid ones, when their own experiences have been minimal. These are the SAME people who don't research the very drugs they shove down their throats, and they are the SAME folks who rush back, breathless, when they have a blip in their viral load or their CD4 count does not rise like they think it should.

We have a WHOLE SITE dedicated to this information. There is NO REASON why someone should join AIDSMEDS and remain ignorant of - get this - AIDS MEDS. Tim Horn and others have done a fantastic and exhaustive job of putting this info out there. If people want to or need to tell themselves that this info does not exist, or are too overwhelmed to seek it out on this site, then that is their issue - and for those newly infected I know what a daunting learning curve it can be. Each in his or her own time, and all that.

Just don't blame me for copying and pasting this site's OWN INFO as a caveat to "HIV is no big deal." And do not try to analyze me when, an an HIV educator, I find a direct line between the "No Big Deal" mentality and the rise in new infections, the stunning ignorance of the newly infected insofar as medication (it's cost, it's effects, it's limitations) are concerned. I find a direct line between the "No Big Deal" mentality and the complacency as regards medical adherence, because people start meds before they are emotionally capable of making that profound commitment. And I have seen all these things on these boards enough to get tired of it.

You seem to thing that there is nothing but a chasm between total optimism and despair. I understand that. But it is incorrect. There is knowledge. There is the power to understand that your experiences, like mine, may or may not reflect others. And there is the ability to empathize with those who might not have that experience, be it positive or negative or somewhere in between.

You should stave off your personal despair by any means necessary. Just don't beat people like myself with that stick in the process. If you do not like my posting, please place me on ignore. If you think I am doing harm to the poz community, email the mods and get me removed from the site. No one forces you to read this. No one forces you to care.

It is good that you do. It is sad that you cannot see the hope and optimism I try very hard to convey in every post.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I just want to chime in here briefly, and state that from PERSONALLY knowing JK, he is a very knowledgeable HIV/AIDS educator, a world-class intellectual, a realist, AND an optimist. Hell, he wouldn't be here if he didn't have a good attitude about living with AIDS. Many of us wouldn't, me included.

Most certainly those of us diagnosed in the 80's have a different 'take' on HIV than those diagnosed in the 00's. Doesn't mean we aren't optimistic, but our experiences have taught us to be first and foremost realisitic in our expectations of a life with AIDS. HIV has done a number on some of us, over the past 20+ years. Who's to say what it will be like in 2020-2025? Time alone will tell. Hopefully, by then there will be a cure. If not, the people for whom HIV is "no big deal" today, may be singing a different tune. This is not to dash hope or optimism, but again, just to be realistic. We are a 'living study', a work in progress.No one knows what 20 years of taking Atripla will do to someone. Hopefully, the impact will not be too severe on the bodies and minds of those currently taking this regimen.

I also have to say that JK is my friend, and one of the sweetest and most humble people I have ever met.He doesn't need and would never ask for me or anyone else to defend him, or his capabilities and expertise on HIV. Matty is right; let's cut out this passive-aggressive mess, and between-the-lines finger pointing and name calling. It's childish and we're all bored with this clowning.

Alan

PS - Cliff, my friend, I am glad to hear that you are doing so well. Hugs to you.

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Half of the folks who take it don't. And the next line of therapy is more expensive AND more difficult.

Now you are being hyperbolic on two points.

The discontinuation rate for efavirenz is between 6-7% and 22%. In the UK, about 20% of people have switch off of efavirenz after two years for any reason, including pregnancy but mainly I guess CNS side effects. This is nowhere near half.

The trouble is, if it's good, it's good, if it's bad, it's very bad. Or perhaps troubling in a lingering kind of way. Which personally I think people should do sommat about, if they can. Then their combo can be as near as damn a little deal as possible.

Next line of therapy being more difficult, natch, nada, should be more easy really in most cases, with CNS side effects gone. Okay, their may be alternative issues to handle, but harder, mainly, I think, no, not these days.

I don't like "no big deal" as a phrase, it's begging your own answer.

If you wanna talk about poor access to care, talk about access, if you wanna talk about people's attitudes to the virus, do that. But don't dump all the shit on the meds. They ain't perfect, far from it. They need to be better, easier. But we have a pretty good start, eh?

I think this is the crux of the issue. We are indeed a work in progress. I remember when AZT was first approved, and people were kicking the bucket because they hadn't worked out all the dosage kinks yet.

I remember when the PIs first came on the scene. I should, they saved my life, and the lives of many others. They also came with a price and I have the buffalo hump, hyperlipidemia and other issues to show for it.

I now see people taking much less toxic meds, doing quite well in many cases, and some seem to have the idea that HIV is just another easily managed and chronic condition.

The problem is, every time we get it all figured out, something new pops up.

We are all guinea pigs.

Knowing that didn't stop me from first taking the less than efficacious Saquinavir in early 96, nor in my switching to Crixivan as soon as could get on the waiting list. (They didn't have enough to go around, so some of us had to wait.)

As Alan said, we have no idea what will happen in 10, 15, or 20 years of taking these newer meds. But the bottom line for me is I know where I would be without them - taking a long dirt nap.

So, I tend to look at all the idea of HIV being "no big deal" with a jaundiced eye, not because I am not optimistic, but because I know first hand the realities of living with HIV are more complex and less certain than many seem willing to admit.

So, I tend to look at all the idea of HIV being "no big deal" with a jaundiced eye, not because I am not optimistic, but because I know first hand the realities of living with HIV are more complex and less certain than many seem willing to admit.

I agree, and I literally look through jaundiced eyes thanks to Reyataz elevating my bilirubin.

The problem is, every time we get it all figured out, something new pops up.

We are all guinea pigs.

I think sums up my experience of taking meds. I agree that the newer meds are less "toxic" and "easier to manage" and have less immediate side-effects. And that's the issue too. We know nothing of the long term side-effects of the newer drugs. In fact, during my latest doctor's visit she she that "we are getting pretty good at keeping HIV at bay for longer periods of time, but the medical community is seeing diabetes and heart disease develop 20 years earlier with patients on HAART."

I'm also going to have to add that I admire Jonathan's passion and commitment for these forums. Frequently being compassionate is not always delivering a message we want to hear. I think a lot of the No Big Deal mindset also comes from denial of the situation. It's all a process; stages of acceptance if you will.

I will not speak to the experiences of LTS's, as I am thankful that I will (most likely) not have to go through the same hell that they did. By this I don't only mean their personal health struggles due to HIV / AIDS but also to the loss of friends and partners from the virus and the lack of any real hope. I think back to my early days (in 2006) after diagnosis and reading story after story of survivors and of those who didn't make it. I think about reading many panels on the AIDS Quilt online. I remember the AMG's where people recount their personal losses (Herman's always stick in my mind). To not learn from these stories and experiences would be stupid, in my opinion.

I'm reminded of HIV and AIDS every time I do anything physical that requires much in the way of deep breathing; I simply cannot breathe deeply. PCP pneumonia took care of damaging my lungs... lungs that I quit smoking 16 years earlier to protect; lungs that benefited from all the cardio exercises I've done since the mid 90's. Yet, to me, HIV is in, many ways, 'no big deal'. It's no big deal that I spent 8 days in the hospital due to pneumonia. It's no big deal in that I can't take a deep breath. It's no big deal that I cannot relocate, change jobs, pursue self employment, etc due to the fact that I'd lose my insurance and have made too much to qualify for ADAP. It's no big deal that I'm having cholesterol issues due, most likely, to Truvada.

So how can I say that it's 'no big deal'? Oddly enough, it's because there is no immediacy to most of these problems (yet). I don't have scores of friends dying; I'm often in relatively large group of guys who are mostly HIV+... and whom I don't expect to die anytime soon. My returning to school is to enhance my marketability for future employment and avoid some of the work / insurance issues I mentioned. I still exercise to improve what cardio / lung function I have. I take better care of myself than I did pre-diagnosis. I've met a lot of great people due to being HIV+. I've also had the best sex in my life post-diagnosis.

In the mean time, I try to remain optimistic that newer treatment regimens will have fewer side effects, that I'll continue to have affordable insurance, that I remain in good health. Had I experienced what LTS' have, I don't know that I'd feel the same.

So, what do ya'll think of the ad? The picture of anal cancer flashes by very quickly that you have to pause just right to see it. The pic is very graphic! Is that anal cancer that was left untreated or is that a normal case?

So, what do ya'll think of the ad? The picture of anal cancer flashes by very quickly that you have to pause just right to see it. The pic is very graphic! Is that anal cancer that was left untreated or is that a normal case?

AIDS is treatable, but still a big deal. My experience has been that nothing about this is easy. I've been very frustrated with that mentality from doctors and family.

I came in late and never knew what it was like in days where it was almost certain death sentence. But I'm not so dense that I don't see that those that came before me, and the LTSs that have supported me, have experienced horrors I will probably never fully comprehend/appreciate. Someone here had a line I love, they blazed the trail, walked it, then went back to pave it, then drive it, and still reach back to help us new to this learn the road. Hopefully the lives and suffering of those that have passed won't have been in vain.

Yeah, pictures of anal cancer are graphic. So was the time photo that brought aids home. But that picture is what gave me the resolve to take my one pill everyday. I don't want to die that way. I don't want others to die that way. If I am part of some experiment, so be it. I hope it benefits those that follow. I'm a lab rat, I get it.

Well, I was recently checking myself out down and inside there. I felt some mass inside that kinda scared me--I'm serious here. But I think it was obviously just some poo-- as it wasn't there the next day. So, I think it was just some Christmas Poo, luckily.

Well, I was recently checking myself out down and inside there. I felt some mass inside that kinda scared me--I'm serious here. But I think it was obviously just some poo-- as it wasn't there the next day. So, I think it was just some Christmas Poo, luckily.

Did you call the police and report it missing ? If someone was stealing my shit I would call the police .

Well, I was recently checking myself out down and inside there. I felt some mass inside that kinda scared me--I'm serious here. But I think it was obviously just some poo-- as it wasn't there the next day. So, I think it was just some Christmas Poo, luckily.

Well masses are one thing. And if it was poo, don't you think some would have come away on your inquisitive little finger? It might have been a haemarrhoid.

Might have been.

Don't discount the presence of lesions. They're different to masses. They can be entirely painless like syphilis but also they can be really painful.

It's a just such a mixed bag.

You can never tell. There could be anything growing down there. Silent and malevolent. By the time you really notice it could be too late.

Well, I was recently checking myself out down and inside there. I felt some mass inside that kinda scared me--I'm serious here. But I think it was obviously just some poo-- as it wasn't there the next day. So, I think it was just some Christmas Poo, luckily.

Lucky indeed. They say that Christmas Poo is the luckiest poo of the year. And holding that poo tightly between your hands and making a wish, that Christmas Poo can - and will - grant that wish. I congratulate you for finding such a treasure.

And with that, I think it is safe to assume that this thread has passed through the collective, been digested and sorted, excrement voided by the moderators, and is now of no use, other than scatological/fetishistic to the body of AIDSMeds.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."